The Invisibility Problem - 2023 09 11

 


The invisibility problem of family caregiving exists across all stakeholder groups including:

  1. Government legislation
  2. Health authority governance
  3. Health provider protocol
  4. General public knowledge
  5. Private citizens providing family caregiver infrastructure and performing family caregiving duties
This invisibility is a growing issue as legislation, policy and protocol are initiated for 'early discharge', 'hospital to home', and 'aging in place' without adequate evidence based data to understand the true cost of family caregiving.

The invisibility problem is not going to be addressed by those institutions who benefit from the lack of data by offsetting the cost of care from institutional settings to family households.

The invisibility problem is not going to be addressed by social and cultural norms that historically undervalue, devalue or deny the true cost of caregiving, including family caregiving.

The invisibility problem is not going to be addressed by family households in the midst of a caregiving crisis who are rallying resources to care for a family member who can no longer fend for themselves.

The invisibility problem is going to be addressed, in part, by rigorous research into the actual work being carried out in family caregiving homes. This research needs the support of government and academia to implement funded inquiries in family caregiving homes. This research would document the time and materials required to provided family caregiving infrastructure. 

The data from this research would make visible the invisible - the time it takes to care for a family member that can no longer fend for themselves, the time it takes to lead, administer and manage a family caregiving setting, and the material costs of providing private property in the service of family caregiving: beds, housing, grounds, supplies, and transportation.

The invisibility problem is going to be addressed by those whose lives are impacted by family caregiving so they understand the roles, responsibilities and risks that are being assumed by families in the middle of a medical crisis. These are family caregiving household leaders who are knowledgeable but not overwhelmed by their family caregiving situations.

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